Ask Me Anything About Bladder Cancer
Last updated: February 2023
Recently I was presented with an amazing opportunity. I was asked to participate in a research discussion. A panel literally asked me anything about bladder cancer! Yes, exactly as the title says!
When you are working in the patient advocate and leader realms, things like this occasionally pop up. Some opportunities to share your voice in this format offer compensation, some do not. For this particular opportunity, I received compensation.
Courted for the opportunity
I was approached directly to participate in this discussion. Thirteen people from 3 institutions joined me for a Zoom call. The sole purpose was for them to ask me about my experience with an advanced bladder cancer diagnosis.
Before the 90-minute session, I was given some basic questions that the team was interested to know. Having had previous opportunities to share my story, all the questions were things that I would easily answer. Again, nothing new to me. Actually, I had some of the questions ahead of time, which in my experience, was a rare treat! I was given a heads up that the team could ask me follow-up questions based on my answers.
After I was introduced, I briefly shared my story before the firing squad began shooting their questions off.
Ask me anything: bladder cancer perceptions
The discussion mostly centered around perceptions - my perceptions and those of the bladder cancer community. I am very accustomed to discussing my own opinions. Still, I generally hesitate a bit when asked to speak for "all" of any group, especially bladder cancer.
I noticed early on in my bladder cancer journey that despite similar experiences or symptoms, bladder cancer is a very individualized experience. Even if the same treatment paths are followed, every person has different thought processes and reasons to pursue their treatments.
Impressions, care, and treatment
The group asked me to talk about my impressions of chemotherapy, targeted therapy, my care team, side effects, new treatments in bladder cancer, and various communications with my care team. They also wanted to know what the buzz was within the community on these same topics.
I made sure that I did things x way for many of the questions they asked me, but many others would answer other ways for many reasons.
The team was extremely professional and kept their poker faces on most of the time. However, one of the ways that I cope with challenging situations is by using humor. Some questions attempted to force my emotional side to come out. I wouldn't say I like showing my vulnerable side to people I really do not know, especially on a business-related Zoom call. So, in turn, I had to crack a few smiles from time to time.
Balancing patient needs and opinions
Towards the end of the conversation, they began asking some questions regarding marketing and programming. They wanted to know what pharmaceutical companies could do to improve the experience of patients.
Here is where things usually get interesting because where a lot of these companies think they should be is nowhere near where the patients need them to be! It is a situation to tread lightly in while still being open and honest.
I shared my opinions on the topics and watched as notes were being taken, heads shook, or nods. As the session ended, gratitude was expressed from all corners of the Zoom room.
I feel like it was a productive encounter.
Sharing is caring
When faced with the opportunity to share your experience with institutions that influence how things are handled with a diagnosis you have experienced, you may not reap the benefits of your input. However, you will most likely help make the experiences of future bladder cancer patients just a tad better than your experience was.
It's a bigger picture kind of thing. Tell us about your experience in the comments below, or share your story with the community.
How long did it take for you to receive a bladder cancer diagnosis?